I suspect we all wonder how we might approach death, and so I asked Ed Gulley if he wanted to talk about it, and he did.
He wants to find a way to be productive and creative, and to find peace before he dies. He has given up on the idea that he has a lot of time left, and believes there is a book about his cancer, and how he responded to it.
I’ve told him that is not a book I can do, but I know how he feels. I came into the room yelling “Wake up, you crazy old bastard,” and he shouted back at me. He is always up for bullshit, no matter how bad he feels. I thought the hospice aide might faint.
Ed never want to be pitied or treated like someone who is sick. That destroys his pride.
Ed is asleep for most of the day now, and although he wants very much to sketch, he sometimes lack the strength and focus to do his work the way he wants.
As he loses strength and function, he is increasingly humiliated by his dependence on others for the most intimate and personal things. I think in so many ways that is the most difficult thing for him. As often happens in these kinds of situation he expresses his anger and frustration at the one he knows and trusts the most – in this case, Carol.
She wrote about this on her blog today. Ed has been turning away from her and avoiding her and asking to be left alone. It is, of course, the disease speaking, brain cancer affects perspective and emotion, and Carol, in addition to everything else she faces, has to bear the brunt of his frustration at being unable to do the things he has always done.
Ed and Carol are very close, and we all know how much he loves her. So does she, but it is hard to bear.
The role of the caregiver is so difficult, and so complex. “I know I should not feel bad for doing what is best for him, but that is easier said that done,” wrote Carol. For sure. There is nothing normal or easy about her life now.
I sat with Carol for an hour today, Ed fell asleep just after our video, which he insists he wants to do. It was good talking to her. We talked about how just a few weeks ago, the two of them were out milking cows and farming. Her whole world has been turned upside down.
I am in a new for more regular routine, I come in the afternoon every day – with a book sometimes, and some food that Ed likes – and I talk to Ed, sometimes read to him, sometimes just sit with him while he sleeps. Sometimes Carol sits down and we talk. I think the afternoons are becoming quieter and more peaceful.
I think that is good for Ed and Carol. The hospice home aide comes every day in the afternoon now, that is essential for Carol, but hard for Ed to accept. Another sign to him of losing his dignity and freedom of movement.
Ed loves company and there is a lot of company, and many people stay a long time. Talking for more than a few minutes is exhausting for him now, and as he said in the video, it takes him longer and longer to recover from fatigue.
I think the truth is that he is always tired now, every day, most of all day, I see it during the videos as well, although the seem to rouse him and bring up clarity and thought.
Today, I brought strawberries and some sweet corn. This is the first day sweet corn has gone on sale this season, that’s a big day in farm country, and I brought six ears for Ed and Carol, and also some strawberries.
Tomorrow, I’m bring some bananas. Ed’s mind is sometimes still quite clear, his body gets weaker every day. He is no longer comfortable sitting up.